Announcement

Collapse
No announcement yet.

In need of support

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    In need of support

    Hello, I am new and have been very confused lately. I thought I would reach out for support and maybe get some questions answered. I know it may be long but please stay with me here.

    I guess I had my first attack in Feb. It started out with just a tingle in my left thigh, I kept thinking it was my phone vibrating but it was not. I do not have any insurance so it took me about 3 months to see a Dr. by this time I started having tingling in my feet and legs and when I looked down it was like a tingling sensation down my spine. I can't remember if I had problems with my arms then or not. My Dr. told me it was neuropathy and put me on Gabapentin. He told me if it does not get any better in about 3 months then I should see a neurologist.

    I finally saw a Neuro in Sep. She did the initial testing and said it was definitively not neuropathy. She told me she wanted me to do an MRI of my spine. I did the MRI and they found 3 lesions. At this point she said probable MS. She recommended a Spinal Tap which I did and the blood tests. The results were all normal except my IGG index was slightly high. I don't even know what that means. It also said there are possible very faint oligoclonal banding pattern.

    So here I am now, she told me she was classifying it as CIS at this point and wants me to get a Brain MRI. She told me what I had in Feb was probably my first attack and what I am experiencing now is the side affects from it. She wants me to start on meds, I think copaxene, I am also OCD and have extreme anxiety about any kind of medication but I feel if I don't everything may get worse. I am in a state of confusion about this and almost in tears just writing this. I don't like having a pity party for one and I feel that's just what I have been doing lately. I am so angry this is happening and have no definite answers. She basically said my symptoms may get better or they may not. I am also still on Gapapentin which does help a little.

    Symptoms: I have tingling numbness in my feet, which is hit and miss. Some days its there and some days its not. Numbness in my legs which I think I have gotten used to. Some days my legs feel so heavy, I don't like to walk or it takes a lot to. My finger tips are numb. I have funny sensation in my fingers like something is there when its not. I still have the funny sensation in my spin sometimes when I move a certain way. I have other things too that I don't know if they are related or not. Also, I have balance issues, cognition issues and I am extremely fatigued most days, even after a good nights sleep. Makes it hard to live a normal life and go to school and work. My mind is in overdrive right now.

    I just wanted to be able to get my story out and whats happening to me. As most probably know its hard to talk about this with people, at least for me anyways.

    I do have some Questions and concerns. What are some coping strategies anybody has used? Am I making this a bigger deal then what it really is? If I also have brain lesions does that increase my chance to have MS? What are the chances and how long does it take to go from CIS to MS? I keep finding conflicting reports. Has anybody on here tried dating and what was the experience once they were told about your MS or CIS?

    I am not married nor do I have children and I'm 27 and am scared of dating. Not only do I have this going on but I have OCD as well. I feel like that is just a double whamming. If I do have kids someday, what are the chances of them having the same thing? I feel like I am worrying about a million and one things and cannot slow down. I know some of the worries are probably silly but I still can't help but worry. I know some questions cannot be answered but just being able to express them helps. I ask my Neuro a million questions but also seem to think of more after I leave.
    Thank you so much for reading this. I know a lot have it worse. This is just too knew to me still.

    ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **


    #2
    Hello and Welcome

    I may not have some answers for you but I understand what you are going through. I was dx a year and a half ago w/ MS and I still have a bunch of problems. My advice would be to keep calm and not let the stress overcome you. It is easier said then done.

    Possibly see a counselor or someone you can talk too. Also write down your questions as they come to you. that's what I have to do. Since I only see a dr every few months now I have to write my questions down.

    Good Luck and be patient!(again easier said)

    Billy
    Leave the Heat and Stress for the birds!

    Comment


      #3
      A. IGG index was slightly high. I don't even know what that means. It also said there are possible very faint oligoclonal banding pattern.

      IgG index is a calculation of your IgG index in your CSF as compared to the IgG index in your Serum. If the IgG index in your CSF is higher then you have inflammation in the CSF. The IgG and OCB go hand in hand to make a diagnosis. Alone either may not. OCBs are a representative of IgG in the CSF.

      B. I think copaxene, I am also OCD and have extreme anxiety about any kind of medication but I feel if I don't everything may get worse.

      Copaxone is a good medication to start off with. It has relatively few side effects. I took it for a long time. If you have a fear of needles, they have an autoinjector that hides the needle and you just have to load it, press the autoinjector tip to the place on your skin and press the button, and you are done. It does sting quite a bit, and leaves a red mark and welt, but otherwise you hardly remember you took it. A nurse will come out to your house and show you how to do it. No worries.

      Your symptoms are pretty typical of MS. You will learn what to worry about and what to live with. Ask your doc about what he wants you to call about. My neuro only wants me to call about new issues or weakness that I have new or old. That was I get IV steroids. Otherwise, I just live with the symptoms. Each doc is different in what they treat. Speak with your neuro and find out what he/she wants to know about, and what is old hat and a new normal for you.

      C. What are some coping strategies anybody has used? Am I making this a bigger deal then what it really is? If I also have brain lesions does that increase my chance to have MS? What are the chances and how long does it take to go from CIS to MS? I keep finding conflicting reports. Has anybody on here tried dating and what was the experience once they were told about your MS or CIS?

      1. It has been a while since I was fist diagnosed, but I think I just learned to know what to expect from my MS specialist, what I could tolerate myself without calling, and what was my new normal. I learned to take time for myself, take long baths, get away when I needed to. Nap every day if needed. Most of all I learned not to care what other people thought about me and my disability. If I couldn't make a dinner date because I was too tired, too bad if they didn't understand. I tried to educate people the best I could. Some friends stay friends, some don't understand and will drop you, thats the way life goes.

      2. Yes. If you have brain lesions it does increase your chance of having MS. You need two or more areas involved in the CNS to have MS. You have lesions in your spine. That is one, hence CIS. If you have lesions in your brain... that is two...MS.

      3. That depends. It depends on how long it takes to get an extra lesion somewhere, or a positive VEP, BAER, or something of the like. It is pretty dependent of a second clinical attack involving a second part of the CNS.

      4. I was already married when I was diagnosed, so I was lucky I guess you could say. However, you need to get out there and date. Date like normal. Don't mention you have this issue until at least the 3rd date. You don't want to overwhelm the girl. Explain everything you know about CIS to the girl. If she is afraid, she will run and she is not meant for you. If not, let it go and enjoy the dating. No need to keep talking about it unless something comes up. Nobody likes a whiner on a date. There will be plenty of time later for all of that if the relationship sticks. But you have to get out there, you are too young to be alone!!

      D. Not only do I have this going on but I have OCD as well. I feel like that is just a double whamming. If I do have kids someday, what are the chances of them having the same thing?

      1. You can get treatment for your OCD. You should probably search for a therapist that treats OCD. Hopefully they can also talk with you about your adjustment to having CIS and the high probability of it turning into MS.

      2. If you have kids they have about a 1 in 40 chance of getting MS. The general population has about a 1 in 750 chance of getting it.


      E. What are some coping strategies anybody has used? Am I making this a bigger deal then what it really is? If I also have brain lesions does that increase my chance to have MS? What are the chances and how long does it take to go from CIS to MS? I keep finding conflicting reports. Has anybody on here tried dating and what was the experience once they were told about your MS or CIS?

      1. Take one day at a time. Try not to worry about what might happen, because it may not and you will have done all of the worrying for nothing.

      2. Yes, if you also have brain lesions, it does increase your changes of being diagnosed with MS. You need to have at least two areas involved with the CNS involved before a diagnosis. That would do it.

      For now, try not to freak out over these stats. Many of us slide through them. My two children...or adults, do not have MS, yet, and have no symptoms of MS. They are doing quite well.

      Its easy when you are first diagnosed with CIS to worry over everything. You may never convert, or you might, and that will be OK too. You have to believe that whatever happens will be OK. Worrying is not good for your health, especially if you have CIS, or possible MS. Do things you like to do, try to keep your mind off of it. If it happens, it happens. Its not a death sentence, nor is it a wheelchair sentence. But you have to start taking care of yourself. Get your OCD in balance. Try your hardest, get a counselor just for the OCD, and maybe one for the CIS. If they are one in the same, great!

      I wish you love, peace, and health. Let us know how the brain MRI comes out, and keep us updated about how you are doing, OK?

      Take care
      Lisa
      Moderation Team
      Disabled RN with MS for 14 years
      SPMS EDSS 7.5 Wheelchair (but a racing one)
      Tysabri

      Comment


        #4
        welcome

        I agree with Lisa.

        Comment


          #5
          Thank you for your replies. It has taken me a while to respond, at the moment I do not have my computer as is getting fixed. I had my brain MRI last Monday and Dr called on Friday. They found lesions in my brain, sounds like quite a few and in different regions. She said as the criteria goes it would lean more towards probable MS but with spinal lesions, symptoms and spinal tap she is confident in diagnosing MS. She said it was hard to tell how old some of them were. So I cried for 10 mn and went and worked out then went to work. I figured staying busy is the best thing I can do right now.

          The hardest part is my mom. She is having a hard time, my parents are retired and travel a lot and she will not be around when I start my meds and she just hates this is happening to me. I have to keep myself together but when I see her break down its hard. I think she is mad at herself which I don't understand, I'm a 27 year old adult and know there wasn't anything she could do. I have to wait until after the 1st to make an apt but my Dr wants me to start as soon as I can.

          I am surprisingly doing okay. I feel a little relieved, the hard part for me before was not knowing and as a person with OCD that is hard. Now I know and I know what I'm dealing with and what I have to do. I am taking the advice of finding some anti anxiety meds and getting more help with my ocd. I know it will be a rollercoaster and I may feel dif. Tomorrow.

          If anybody has thoughts or want to share what it was like for them when they found out I would like that. Thank you for listening and letting me get some things off my chest. I know I have a lot of questions as I don't have an apt until February, she just called me on the phone to tell me and my mind was in a spin, i did not know what to ask.

          ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

          Comment


            #6
            LMO: I am so very sorry you had to join the club. However, I am happy now that you will get some medication to get help. It has been a while since I was newly diagnosed but I do remember those overwhelming feelings. There is not much you can do about them but walk right through them. Sometimes a counselor will help to sort the feelings out, and give you somebody to talk to about these things since your mom will not be there.

            Another thing to do to relax is to realize you no longer have to go through the diagnostic process and that is a load off! The medications are really no big deal. Choose wisely. My advice is to go to the National MS Society and read about them all, then come back to this site and read about them here on our medication boards. *A word of caution: People that post on our website have a tendency to be more negative then positive, some are positive threads, but most people tend to write in when they are experiencing something bad, not something good.

            Each drug has its own efficacy for slowing down the disease by way of preventing new lesions and decreasing relapses.

            The CRABS drugs (Copaxone, Rebif, Avonex, Betaseron) all have a 30% efficacy for preventing new lesions and decreasing new relapses.

            Aubagio: Also has about a 30% efficacy for preventing new lesions and decreasing new relapses.

            Gilenya: Another pill that actually has about a 50% efficacy for preventing new lesions and decreasing new relapses.

            Tecfidera: The newest pill also has about a 50% efficacy for preventing new lesions and decreasing new relapses.

            Tysabri: An infusion once per month with the threat of PML and death, has an efficacy of 80% for preventing new lesions and decreasing new relapses. I take this one, but I have had MS for quite a while.

            Best of luck to you as you pick your new meds! Remember if you don't like them you can always change.
            Let us know what you decide and how it is going, OK?

            Take care
            Lisa
            Moderation Team
            Disabled RN with MS for 14 years
            SPMS EDSS 7.5 Wheelchair (but a racing one)
            Tysabri

            Comment

            Working...
            X